Why I do what I do

It is almost Christmas. While I am overjoyed to spend this wonderful holiday with my sweet rainbow girl, I am sad I will not be with my extended family back home in Rochester this year, for the first time ever in 30 years.  I will not be making the trip because I have to work all week after Christmas next week, because I have no time off to take, since I used it all to take extra time off with miss Eliana. I need a little reminder right now, as to why I do what I do.  Here is a letter I received from a mom a couple of years ago:

“I want to thank you for your support, guidance, knowledge and expertise in speech delay and development.  All of these factors enabled my son and I to develop a relationship with you.

I brought my son to you almost a year ago with barely a vocabulary of 20 words.  I know his disability was mild compared to the many children you and your colleagues work with on a daily basis.  This helped me to count my blessings and be more patient.  At the same time you did not minimize his disability.  You instead gave me hope, helped me overcome my own guilt of what I did or didn’t do right.

In our therapy appointments you taught me how to communicate with my son. Watching you in our weekly sessions and participating, I was able to learn those tools and incorporate them at home. This I believe was huge.  I learned a lot about speech delay, therapy and techniques of which you taught my son and I. 

Therapy with you enabled my son to increase his vocabulary. He then learned to put 2 words together, then three.  “M” has now progressed to where we even hear a sentence.  What a success!  I can’t even describe the feeling inside as a mother how I feel to finally hear my son talk.

Andrea, I thank you for that feeling I have inside and the hope I feel.  I thank you for the hard work you do on a daily basis for me, my son and families like us.  I thank you for the outstanding qualities that you possess as a person and incorporate them into your profession.  I thank you for your knowledge and expertise.  Children’s Hospital, my family and others should be grateful for you and what you do.

Thank You, Andrea!”

This little boy is now in regular education, private school, 1st grade with speech and language within normal limits and was discharged from therapy in April, just before Eliana was born.  This is why I do what I do.  This is why I will begrudgingly drag my feet to work next week, even though I want to be home with my daughter and/or back in Rochester with her and all my extended family celebrating the holidays, because it isn’t always about me.  It’s about kids like little “M” that need me too.  It is about being where you are because you are meant to be there. 

 

Forever Missing Kaiya Rae

Ladybugs and Rainbows

Andrea

Because it has been too long

A new entry to this “long-lost blog”, because it has been too long, and I have a lot on my mind as the Holiday season begins once again.  My thoughts, in the form of a letter to my beloved 2nd daughter, my Rainbow, my Eliana Nicole.

Dearest Eliana,

My heart aches for you.  Though you are a wonderful, beautiful, healthy and happy tiny girl, who seems to have everything a small one could want for, you will always miss something you never knew, but should have.  As I reminisce about the years I spent growing up with a big sister, a tear rolls down my cheek.  For you will never know the glory of being the little sister.  You will never know the silliness, the laughter, the love, the tenderness, the wonder that is a big sister. Even the fights, the envy, the anger and tears that having a big sister can bring, will be absent from your life, and even this breaks my heart.  I know a time may come in every little girl’s life, who never had a big sister because she is the oldest, or the only, or has a family full of boys, when she will say to her mother “I wish I had a big sister.”  This doesn’t console my aching heart.  For these little girls were never meant to have a big sister.  You my child, are different.  You have a big sister.  One that will always be a part of our family, one that will always be the rock that holds us together, but one that you can never see, or hold, or hit, or bite.  Not one who can braid your hair, teach you about boys, hold your hand when you cross the street, scold you for touching her things, be annoyed at you for trying to be just like her, hug you when you are sad.  You will never know the special bond that is the love between a little sister and her big sissy.  In fact some day you may take the role as BIG sister, although you were meant to be the little.  Though I know your life will not suffer, and you are loved beyond words, my heart still aches.  For I cannot imagine my life with out my big sister, your aunt Mimi, by my side.  I wish so much your sissy were here for you in the same way mine has been with me.

There will be a day when I will hear you utter the words “I wish I had a big sister” and my heart will fall into pieces.  I will simply say “you do, my love, and she is always here” as a tear rolls down my cheek and I gently tap your chest, above your beautiful, strong, little heart.  For you may never know what it is like to grow up with a big sister by your side, but you my love, are lucky enough to have your very own angel. 

I love you more than you may ever know. 

Love,  Momma

It only took 3.5 months….

I realized something the other day. I realized I love my baby. No I’m not saying I didn’t love her before she was born, or as soon as she was born, or all the time she’s been here. Of course I loved her. I would give my life for her. I just didn’t allow myself to feel that deep love, that feeling where you love someone so much it is scary, so much it hurts. I had my guard up. I bonded with my baby, but something in the depths of my brain where evil thoughts lurk, kept me from truly letting go. I had to allow myself to believe I would be ok if she died too. Truth is, it would never have been, is not and will never be ok. It only took me 3.5 months to realize this. I love my baby so much that it scares me. I had a good cry with this realization. The realization that my very well being depends on the well being of this small child. I didn’t cry because I’m scared, or because I don’t want this feeling. I cried because it took me so long to love her this much. I cried because it sucks that our past prevented me from innocently loving my child with as much passion as I loved her sister the moment I laid eyes on her. I’m sorry sweet Elle Belle. I have always and will always love you just as much as your big sister, it just took me a while to allow myself to admit it. You are the light in a world full of darkness, the rainbow in the sky full of raindrops. I thank God every single for day for each moment you are in my life, and I pray for a gazillion more moments to come.

Ladybugs and Rainbows forever.

I need a new signature…..one that labels me as Momma to BOTH of my sweet girls!!
Ideas welcome :-)

The Lord has responded

If you are an avid blog follower you know that I have been expecting my little rainbow baby.  You also know that I have a thing for names and their meanings.  It is with great pride and immense joy that I announce to the blog world that Eliana Nicole arrived 1 week ago today, 4/29/12 at 7:56am.  She weighed in at a whopping 8lbs 5.2oz and 20 inches long.  She seems so tiny to me though!  She is truly a gift from God.  She looks a lot like her big sister.  The moment I looked down and saw her in the doctor’s arms my heart filled with every emotion possible and I cried like I haven’t cried in a long time.  She is amazing.  She truly lives up to the meaning of her beautiful name: “the Lord has responded”.   We prayed for another baby.  I prayed for a little girl.  We prayed for an easier/shorter labor and delivery.  My friends, the Lord has responded.  From the time I started contracting at home to her arrival was less than 12 hours.  I pushed 3x and she was in my arms.  She is a beautiful, healthy and strong little girl.  He could not have responded more perfectly, more accurately.  Our prayers have been answered.

So, you ask, what is it like raising a newborn after losing your first to SIDS?  It’s just like raising a newborn, only scarier.  I don’t check her every 3 seconds when she is sleeping….anymore.  It only took a few days to overcome that one.  I actually sleep when she sleeps.  I check on her a bit more often that I would have with Kaiya, but not obsessively.  For the first time last night I woke up before she woke me with her whines and cries.  I did not freak out and grab her and wake her thinking she wasn’t breathing, like I thought I would.  I simply looked over the edge of her cosleeper bassinet, saw the little rise and fall of her chest, and layed back down.  We have an Angel Care monitor and a Snuza monitor in her closet.  They were given to me by complete strangers from a message board I belong to.  I am eternally grateful for all the support.  However, they haven’t left the closet, and I’d say that’s HUGE in our world.  That may change when she moves into her own room, but for now, they remain in her closet.  Every day I rejoice for another day with my precious girl.  How do I sleep, or walk away when she’s sleeping, without being over taken with fear and anxiety?  Faith.  I mush believe that this child is here to stay.  I just trust God.  That’s all I can do.  I cannot see the future.  I can not change what is meant to happen.  I just trust that this time is different, and it will not happen again.  It isn’t easy, and I have to say it out load a lot to make myself believe it, but I do.  She has a special angel watching over her, and I trust her and God to keep her safe.

I am completely and totally in love.

I love you with all my heart Eliana Nicole.

Miss Kaiya Rae, you will always be momma’s baby and I love you more today than ever.  Continue to watch over your little sister forever and always.

Love,

KaiyaRae’s Momma

The bottom of the well

I didn’t write this poem, but I had to share it.  For all the times I couldn’t get up, and someone was there to lift me.  For all the others who called on me to help them up.  

The Bottom of a Well

by Alicia Allman

I fell into a well on December 13th.

It’s a deep well, but not full of water.

It only comes to my waste.

It’s not enough to drown me, but enough to make me cold and uncomfortable.

It’s dark and lonely down here at the bottom of a well.

I scream for help, but no one hears my cries.

I try and get out, but its to slippery to climb.

I sometimes make it half way up to see a glimmer of light, but then I fall back down into the darkness.

As much as I try I can’t get out.

Time passes by, but I don’t know how long.

After almost giving up, I notice there has been a rope down here the whole time.

I tug on it…its not that sturdy, not enough to carry my weight.

Then I hear a shout. “I fell down this same well, let me help pull you out”

I feel some hope.

But one person is not enough to pull me out. Then I hear a second shout, “I have fallen down this well also, I can help pull you out.” The shouts keep coming from others saying they have all fallen down this same well. They all help to pull me out. I still need to use my strength. I can’t fully rely on the others to pull me up.

Finally, I’m up out of the well. I embrace the others who helped me. They cry and say “Its the scariest place to be, It was the darkest and worst time of our lives. But we had others help us out of the bottom of the well.”

“At times you may fall back down there, but we will be here to help pull you out again.”

I would not be where I am today with out the people who pulled me out of the dark, dark well.  The love I have for all of you could fill the ocean.  There is nothing quite like being surrounded by those who “get it”.  Thank you, from the bottom of my heart.  

KaiyaRae’s Momma

And so it begins.

There is only so much a person can do to combat fear and anxiety.  I do pretty well when I’m awake.  I’m a lean, mean, positive thinking, self talk using, praying machine.  When awful, terrible visions and thoughts creep in, I’m pretty darn good at chasing them away.   There isn’t much I can do it about when I’m sleeping though.  The first few weeks after Kaiya nights were filled with terrible, strange, dead baby related nightmares.  The only thing to stop them and help me sleep was medication.  Pregnancy not only triggers some really strange dreams for me (not all scary nightmares, but very vivid and strange none the less), it also does not lend to using medication to sleep without remembering them.  I’ve had nightmares this pregnancy about tornadoes, fires, other strange and creepy disaster type things.  The one thing I had made it this first 24 weeks with out, were nightmares about the baby.  I knew it would come, but still I hoped and prayed it wouldn’t .  It did anyway.  Saturday night I had my first baby nightmare.  Not just any baby nightmare.  A SIDS nightmare.  It started out fine, I was holding and playing with my little girl.  I tried to nurse her and she wouldn’t latch.  In the dream I had been out for the day and left her with her Nana so I remember thinking she probably isn’t hungry because Nana gave her a bottle.  I swaddled her all up, but she kept fighting the swaddle.  Finally I got her swaddled up and to sleep.  Later I went to check on her, and that’s when it flipped from just a vivid dream to a nightmare.  I found her face down and cold.  I screamed “NO! NO!” and flipped her over.  Then it turned into a strange, unrealistic nightmare.  She was in a tiny tin box.  As I pulled her out of the box her sweet face turned into some sort of demon baby looking face.  An obviously not alive, demon baby face.  I tried starting CPR and every time I breathed into her, her body made all kinds of strange wheezing sounds. The last thing I remember is looking at the scary, strange, hollow eyed, mouth open demon baby face.  Then I woke up suddenly, eyes snapped open, in a full on sweat, with my heart pounding out of control.  I can self talk and pray my way out of a lot of things.  But I can’t seem to talk my out of seeing that horrible demon baby face every time I close my eyes.  The only peace I can find is that it did turn into an unrealistic, demonic nightmare, rather than a vivid real life scenario.  This is just another part of the journey.  The fear, the anxiety and the awful dreams of terrible things happening to my sweet baby.  This is what the rest of my life is like.  Thanks SIDS.  I appreciate the parting gifts….

 

With hope for sweeter dreams…

 

KaiyaRae’s Momma

The most wonderful time of the year.

Though I have much more hope in my heart this year, it still doesn’t feel like Christmas with out her.  I can’t stop looking at toys and clothes that I would buy her this year, and staring at her stocking, wondering what we would fill it with.  Feeling saddened that her beautiful, hand-made stocking, has never been filled, and will never be.  We have filled this season with all types of “Christmassy” buying toys and gifts for less fortunate little ones, making wreaths for the nursing home at the Advent night at church, caroling with the youth group.  It really does feel like a wonderful time of year.  It’s just that the most wonderful thing about it, is missing.  She would be 18 months old this Christmas, this past Saturday to be exact.  Such a big girl!  I chose an 18 month old little girl, who apparently lives only a few miles away, from the Angel Tree this year.  I bought the cutest little lime green bubble coat and wonderful little musical learning toy.  I wish I could meet her and see her open it up on Christmas!  I wish Kaiya were here, and opening up matching packages on Christmas day.  I’m doing quite well, in terms of the grieving realm, these days.  I still think about her all the time, and of course I still wish I could change what happened, and that she were here with me.  I’ve found tremendous hope and strength through this wonderful baby, this new light in life, growing inside.  It’s hard not to say “if” instead of “when”, in conversing about this little one.  It has taken a lot of strength and self talk to change the way I see the future.  Of course none of us know what the future brings, and how long each of us will walk this Earth. I do know that I have faith and trust that this baby is here to stay.  It doesn’t stop the worry and the wonder, those are always there.  It takes tremendous strength these days to plan ahead, to have hopes and dreams for this little girl.  I must believe she WILL be here next Christmas.  We WILL fill her stocking, she WILL open her gifts.  As I type this, I feel a little bump-bump from inside.  Which is still rare these days.  A little reminder that she’s still here, that she isn’t going anywhere for a long time.  We had an appointment and ultra sound with a specialist at Maternal Fetal Medicine at the hospital for our 20 (well 19) week visit.  Not because we, or my doctor, thought there was anything to be found, just as a precaution.  We found out of course, that miss Kaiya Rae, is having a little sister!  We also got to see some really neat things, like the blood flow from the placenta and the cord, and from the cord to her organs, in and out of her lungs, kidneys, heart.  All of which looked excellent, according to the tech and doctor!  We also found out that I have something called Anterior Placenta.  This isn’t an issue, it doesn’t mean anything is wrong.  It just means the placenta attached in the front, and thus acts somewhat like a shock absorber to the baby’s movement and kicks.  It makes most of her movements completely unnoticeable and the ones that I do feel are not very strong yet.  It just makes for a nervous mommy really.  Within the next few weeks, she should be big enough and strong enough, that I’ll start to feel movements regularly and more on a “normal” scale, compared to other pregnancies.  I though we just had a quiet baby, not as active as her sister.  Boy was I wrong!  She was moving non-stop during the ultrasound, so active it was hard for the tech to get her to stay in a position long enough to get a pic and take measurements!  All that movement and all I felt was 2 little bump-bumps.  All in all it was a wonderful little early Christmas present to get to see her, and find out the great news that she looks perfect and healthy in there, all her organs in the right places and working correctly!  I’ve realized something the past week.  Every time I pass Kaiya’s bedroom, I blow a kiss and say I love you.  Not that I just realized that, I’ve been doing that for a long time.  What a realized is, I talk to my angel, blow her kisses, tell her I love her, all the time.  Though, short of a little “Hello baby” when I feel a little bump inside, and of course singing to her, I had yet to talk to our new little bundle.  I hadn’t yet told her that I love her, blown her a kiss.  I instantly felt horrible, like I was already treating her as “less” than her sister.  I know it isn’t true, it isn’t something I meant to do and it was just part of my habit, and I wasn’t yet into the habit of it with her.  After all, she’s still so new!  Since that moment of realization, each time I pass Kaiya’s room, and blow my kiss, I take a little kiss and place it on my tummy too!  I love both of my sweet girls, equally.  I know that.  I just want to make sure THEY know that.  That is the important part.  I’ve gotten way off track.  This was supposed to be a post about Christmas!  It’s been a while since I’ve written and I guess I just had a lot to say.  It really is a wonderful time of year.  We have so much to be hopeful and thankful for.  It’s hard to remember that sometimes.  Have a very Merry Christmas my blog friends.

♥Ladybugs and Rainbows ♥

With Hope and Faith,

KaiyaRae’s Momma

Time in a bottle

The final milestone in the first year of grief is almost here. In a very short 10 days, it will be the 1 YEAR anniversary of her death. The last year can only be described as the longest year of my life that has passed by the most quickly. It is strange, isn’t it? How a single moment can pass so painfully slow, and yet way to quickly all at the same time. Each moment still seems this way. I can’t believe it has been a whole year since I held her in my arms and yet at the same time it feels like ages ago that I last felt her skin against mine. It’s been way too long since I have kissed her cheeks, and yet I feel like I dropped her off at daycare for the last time just a moment ago. Time is a strange thing. It becomes even more strange when you are grieving. Time is precious and we don’t have enough of it. That I know for certain. So why do we constantly wish moments would pass more quickly? Because time hurts too. I try to remember that life can change in a single moment, and I should cherish every one. I try. I still find myself wishing moments would pass faster during a long day at work. I still find myself wishing May would come sooner, and this baby will be here. I try not to wish it were May 2013 and this baby is already 1. I don’t want to rush your life sweet Rainbow baby, but I want so badly to know that you are still here in May 2013. I don’t want to miss a moment, and yet I want moments to pass more quickly. Time. It all revolves around time. How much we have. How fast it goes. How we spend it. We can’t bottle it. We can’t get it back once it’s gone. These are things I need to remind myself every day. Don’t rush it. Enjoy each moment. Please, time, be kind to me. Please brain, don’t beg for less of it, or for it pass more quickly. Please enjoy every moment. Life can change in minute, and hour, a day, a week, a year. There are no guarantees. No one is guaranteed a tomorrow, so don’t forget to enjoy today. I remember and cherish each and every moment I had with you sweet Kaiya. I only wish they hadn’t passed so quickly.

Rainbows and Ladybugs. Forever and Always.

Love,
KaiyaRae’s Momma

 

“Time changes everything except something within us which is always surprised by change.”
Thomas Hardy

Along came a Rainbow

“Rainbow Babies” is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn’t mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope. -Author Unknown

Rainbow Baby is term used among bereaved parents to represent the baby/babies conceived and born after loss due to miscarriage, still birth or infant death.  A rainbow is a symbol of hope, a light at the end of the tunnel, beauty born out of chaos.  It isn’t easy to imagine raising another child, after such a profound loss.  One entertains questions from “will this baby die too?” to “will this child feel less important, less loved, then their sibling?”  Though among the aftermath of tragedy, and the fear of the unknown, the prospect of being parents again, brings hope and faith, laughter and love.

My rainbow came disguised, of course as a lady bug.  One day, in August, Karl and I walked along the quiet streets of our neighborhood, chatting away, and sometime flew from the tree above and landed on my belly.  As I started to freak out, thinking it was a scary bug (I HATE bugs!), I realized it was a lady bug.  It sat for a minute as we continued our walk, and then softly flew away.  I wondered about the meaning of this little visitor, knowing it was a special sign from my little angel.  For two weeks, I anxiously waited to find out if this little visitor had left a special gift behind.  Sure enough, two weeks later, we found out that our very own Rainbow Baby was on its way.

As we approach a very a daunting time in our lives, the anniversary of the loss of our precious first born little girl, the day our lives changed forever, we prepare for our lives to change all over again.  With each passing day we realize again, just how quickly time flies, and how powerful a moment can be.  Excitement entwines with fear, grief mixes with hope.  Time passes entirely too quickly and I can’t seem to catch up with it all!  Here I sit, just over 13 weeks along, and growing every day.  Yet Kaiya’s room still sits, sheet on crib, pile of laundry next to changing table and K A I Y A hanging above.  Karl says when I am ready, he will take it down, and change the sheet, and put away the clothes.  When I’m ready.  I’m not ready.  I’m ready to be a momma again. I am ready for a huge, bulging belly with sweet little feet in my ribs.  I am ready to hold and nurse and rock a new baby again.  I am ready to welcome a new life, but I can’t seem to part with what is left of hers.  It will come.  I know her things will always be a part of our home, and our lives forever, and I know this baby needs a special room of it’s own.  I will get there.  My rainbow will help.  My angel will help.  For now, I’d just like to sit and stare in wonder at my growing belly and enjoy a world where emotions run free and it’s ok, because I’m pregnant and all pregnant women are crazy!

Today we rejoice in the time we had, the beauty yet to be seen and the memories we will always share.

To Rainbows and Ladybugs. Here begins a new chapter in the life of a SIDS mom.

Love,

KaiyaRae’s Momma

Believe in magic

I haven’t written in a long time.  It isn’t because I don’t have anything to talk about, or that I don’t miss my sweet girl as much.  Life just kind of takes over sometimes.  I’m sure everyone can understand that.  Sometimes I write blogs in my head while I am busy doing other things, and I just never get around to actually typing them up, or forget to when I am actually sitting at the computer.  Of course, almost a year has gone by now, and I am certainly in a much better place than I was 8, 6, or even 3 months ago, so I don’t need an outlet as much as I used to either.  Believe me I have my moments where I still want to scream and I hate the world because she isn’t in it.  I don’t think about her any less, that is for sure.  I have just come to a place where I can smile when I think of her, more often than cry.  Of course as write this, a tear rolls down my cheek, but only because blogging time, is always a “good cry” time for me.

Today is Monday.  Monday’s were always the hardest, and lately have been pretty hard again.  Monday is my day off, and Karl is always working on Monday’s unless it is a holiday or something.  So Monday was always Kaiya and Momma day.  Just the two of us.  So often Monday’s lately have been me attempting several times a day to peel my body out of bed or off the couch, and failing.  Filled with “I’ll do this” and “I’ll do that”  notions, that usually never happen. Sometimes because I am sad and depressed, but usually because I just get so tired and lazy! If I leave the house at all on a Monday it is only because I have an appointment, which is usually therapy.  Most times I barely get myself together to get to therapy, and, well it’s therapy, it helps me!  Today my list of things to do included cleaning up Kaiya’s garden a bit and racking the leaves in the yard.  Barely wanting to stand up long enough to switch loads of laundry, something I must do, or we wont have clean clothes to wear, I didn’t think I’d make it out the door.  Finally this afternoon, I decided I couldn’t be lazy and depressed all day, every Monday and I needed some fresh air.  I headed out to the gardens and began clipping some dead heads from the flowers.  I noticed a bug fly by and jumped.  Then watching it, I thought it looked like a ladybug.  Following it to its landing spot, I realized it was a ladybug.  I watching if for a minute, and talked to it as if it were Kaiya, something I always do when I see a ladybug.  Then I noticed another one.  Looked around and noticed another, and another, and realized I was surrounded by them.  There were thousands.  The covered the front porch and garden, the side wall of the house and Kaiya’s garden!  Like magic they just seemed to keep multiplying.  Like magic, my little girls spirit surrounded me, and I all I could do was smile.   Believe in magic.  Look closely and you will see it all around.  If I hadn’t gone out to the garden today, I never would have known I was surrounded my thousands of ladybugs, and my baby girls happy spirit.  She is with me everyday, but sometimes it’s up to me to find her!  Sometimes you just have to remember that you believe in magic, in order to get yourself out of bed and find it!

I love you sweet Kaiya Rae.  I love more and more each day.  Keep watching over your Momma and daddy, and cousins and friends too.  I love you to the moon and back, forever and always.  Until we meet again, I hold you in my heart.

KaiyaRae’s Momma

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